AMA Journal of Ethics® August 2018 Volume 20, Number 8: E675-792 Roles of Physicians in Healthy Dying From the Editor Ethical Dimensions of Caring Well for Dying Patients 678 Ilana Stol, MD Case and Commentary How Should Refusal of Tracheostomy as Part of an Adolescent’s Perioperative Planned Intubation Be Regarded? 683 Case and Commentary by Katherine Gentry, MD, MA, and Aaron Wightman, MD, MA How Should Physicians Care for Dying Patients With Amyotropic Lateral Sclerosis? 690 Commentary by Alexander Craig, MPhil and Elizabeth Dzeng, MD, PhD, MPH Should Physicians New to a Case Counsel Patients and Their Families to Change Course at the End of Life? 699 Commentary by Shyoko Honiden MD, MSc and Jennifer Possick, MD How Should Physicians Manage Organ Donation after the Circulatory Determination of Death in Patients with Extremely Poor Neurological Prognosis? 708 Commentary by James L. Bernat, MD and Nathaniel M. Robbins, MD Podcast Healthy Dying and How It Can Happen: An Interview with Dr. Helen Chapple and Caitlin Doughty Medical Education Four Communication Skills from Psychiatry Useful in Palliative Care and How to Teach Them 717 Indrany Datta-Barua, MD and Joshua Hauser, MD AMA Journal of Ethics, August 2018 675 Which Critical Communication Skills Are Essential for Interdisciplinary End-of-Life Discussions? 724 Mark Pfeifer, MD and Barbara A. Head, PhD, CHPN, ACSW In the Literature Clinical Momentum as One Reason Dying Patients Are Underserved in Acute Care Settings 732 Helen Stanton Chapple, PhD, RN, MA, MSN, CT AMA Code Says AMA Code of Medical Ethics’ Opinions Related to End-of-Life Care 738 Rajadhar Reddy and Danielle Hahn Chaet, MSB Policy Forum Should There Be a Disclosure Mandate for Physicians Caring for Perinatally Infected Adolescents Who Don’t Know Their HIV Serostatus? 743 Sabhyta Sabharwal, MPH, Jason W. Mitchell, PhD, MPH, and Victoria Y. Fan, ScD, SM For People Dying to Talk, It Finally Pays to Listen with Reimbursable Advance Care Planning 750 Carin van Zyl, MD and Dawn M. Gross, MD, PhD Medicine and Society How Should We Enhance the Process and Purpose of Prognostic Communication in Oncology? 757 Bryan A. Sisk, MD and Jennifer W. Mack, MD, MPH How do Medicalization and Rescue Fantasy Prevent Healthy Dying? 766 Peter T. Hetzler III and Lydia S. Dugdale, MD, MAR Art of Medicine Do No Harm 774 Artwork and caption by Tracy A. Brader, MD Unrepresent 776 Artwork and caption by Munir H. Buhaya Cruel Carousel: The Grim Grind of “Compassionate” Dialysis 778 Artwork and caption by Nathan A. Gray, MD 676 www.amajournalofethics.org Resilience 780 Artwork and caption by Cheyanne Silver Personal Narrative The Role of Hope, Compassion, and Uncertainty in Physicians’ Reluctance to Initiate Palliative Care 782 Nora W. Wong, PhD Specialized Palliative and Hospice Care and the Importance of Mourning our Nation’s Veterans 787 Tracy Shamas, MSN, APRN and Sarah Gillespie-Heyman, MSN, APRN AMA Journal of Ethics, August 2018 677 AMA Journal of Ethics® August 2018, Volume 20, Number 8: E678-682 FROM THE EDITOR Ethical Dimensions of Caring Well for Dying Patients Ilana Stol, MD Dying is a uniquely individual yet deeply shared and universal experience; it profoundly impacts perceptions of culture, personhood, and identity. For many Americans, it is also an experience widely discrepant from the one they want and envision for themselves and their loved ones.1 Over the past decade, there has been growing awareness of the incongruence between the way Americans say they want to die and how they actually do.1 But while most would agree that this reality is not the ideal that clinicians or patients strive for, what is less agreed upon is what the roles of clinicians and patients should be in defining what actually constitutes dying and good care of dying people. What do patients and clinicians need to know about dying and care at the end of life? What barriers exist to accessing and employing this knowledge in the face of difficult decisions? To best answer these questions, it is useful to examine the social structures and supports already in place for end-of-life care and to understand how they are being utilized. To begin with, hospital palliative care programs are expanding rapidly in order to meet the physical and emotional needs of patients with serious or terminal illness.2 Robust evidence now exists demonstrating that early palliative care improves the dying experience for both patients and families while generally reducing health care costs and potentially prolonging survival.3,4 Despite these facts, there is significant variation in physician practice in the care of patients at the end of life and a general consensus that palliative and hospice care are underutilized by physicians.5 Underlying these facts is an intricate network of social, political, and cultural factors that have real consequences for dying patients and their families. In order to provide the highest quality end-of-life care, clinicians have to both recognize and reconcile the complex patient and physician factors influencing the dying experience. This issue of the AMA Journal of Ethics aims to explore each of these factors and their critical implications for care at the end of life. The ethics cases in this issue examine a number of important themes crucial to discussion of care for the dying patient. Alexander Craig and Elizabeth Dzeng examine the potential roles and ethical limits of physicians in facilitating patients’ control over their own death experience through a clinical case of a patient with amyotrophic lateral sclerosis (ALS) who asks for assistance in ending his life. In doing so, they provide a framework for exploring the ethical implications of active physician aid in dying in cases in which the nature of patients’ terminal condition renders them unable to exercise the 678 www.amajournalofethics.org right granted to them in states that have passed death with dignity laws. In the case of a patient who refuses tracheostomy as part of a planned perioperative intubation, Katherine Gentry and Aaron Wightman examine the moral quandary of an anesthesiologist who wishes to respect the patient’s autonomy but fears deviating from the standard of care and being culpable should the patient die. Shyoko Honiden and Jennifer Possick navigate end-of-life decision making in situations in which physicians don’t agree on whether to pursue comfort-only care for a complex patient in the intensive care unit. The authors argue that shared decision making allows for physician variation but that clinical momentum—the escalation of aggressive care at the end of life—might lead clinicians to pursue care that puts them in conflict with patients’ wishes and agreed-upon treatment plans. In the fourth case, James L. Bernat and Nathaniel M. Robbins examine the medical definitions of death and their impact on the organ donor dying experience in the case of organ donation in a young woman whose heart stopped in the operating room. The authors highlight the variation in definitions of donor death among hospitals in cases of organ donation and how physicians justify their roles in the dying process of living donors for the benefit of preserving the transplanted organ for the recipient. In our current health care climate, it is becoming more and more self evident that clinicians must think critically about systemic implementation of effective communication concerning patients’ prognosis and end-of-life care. Carin van Zyl and Dawn M. Gross discuss the significance and inherent challenges of recent legislation under which Medicare now provides reimbursement for advance care planning.6 The authors deliberate on the fact that, unlike other reimbursable interventions such as medical procedures, formalizing standards and measuring outcomes for advance care planning conversations is both ethically challenging and fundamental to the competent delivery of patient-centered end-of-life care. Bryan A. Sisk and Jennifer W. Mack define the purpose and process of prognostic communication and argue that while most interventions aimed at improving prognostic communication have been focused on the process, more work needs to be done to address the purpose of such communication. Providing an example of the importance of diagnostic communication, Sabhyta Sabharwal, Jason W. Mitchell, and Victoria Y. Fan discuss the need for policies mandating serostatus disclosure to adolescents who, when they become adults, will be required by law to disclose their positive serostatus to needle-sharing or sex partners. Two articles address ways in which training and education in end-of-life communication can deepen physician comfort with and effectiveness in engaging in difficult conversations. Mark Pfeifer and Barbara A. Head provide an overview of evidence-based communication skills necessary for meaningful end-of-life conversations as well as a discussion of established frameworks for developing clinician competency in these skills. Indrany Datta-Barua and Joshua Hauser discuss similarities between psychiatry and palliative care and how certain skills and approaches key to the practice of psychiatry can AMA Journal of Ethics, August 2018 679 be applied and incorporated in the practice of palliative care. In further exploring the events leading up to death, 3 articles examine the impact of medical interventions on the dying process. Peter T. Hetzler III and Lydia S. Dugdale discuss the modern transformation of death as a natural process into one that must be intervened upon or “medicalized.” Helen Stanton Chapple examines clinical momentum through the lens of ritual, reimbursement patterns, and actor network theory and considers how dying patients are underserved when this happens. And, in the podcast, Chapple discusses how hospital clinicians can allow patients and their families to take the lead in the dying process, and Caitlin Doughty discusses what clinicians can do to help families begin a grieving process in the immediate aftermath of a death. Two other articles focus on personal experiences of providing care to highlight the importance of individual perspectives on illness and death. One article discusses unique and underexplored needs of veterans at the end of life. Tracy Shamas and Sarah Gillespie-Heyman emphasize the impact of military culture, war, and posttraumatic stress disorder on veterans’ end-of-life care and discuss their own experiences in individualizing their approach to care for veterans with challenging needs. From a patient perspective, Nora W. Wong explores the seemingly paradoxical role of compassion in the lack of, or late, palliative care referral by physicians and discusses how this potential barrier can be overcome through improved communication. Individual perspectives take a visible form in 4 artistic contributions. In his graphic narrative, Nathan A. Gray explores the irony and implications of “compassionate” dialysis provided to immigrants without health insurance. Two images provide different perspectives on resuscitation. While Tracy A. Brader portrays a team effort resuscitation attempt, Munir H. Buhaya portrays the solitariness of an unrepresented patient for whom a physician completes a do-not-resuscitate order. And Cheyanne Silver portrays the hope of physicians struggling with dashed career expectations and disappointment. The diverse array of clinicians, scholars, and trainees who have contributed to this month’s issue of the AMA Journal of Ethics focus our attention on many challenges facing end-of-life care and implore us to regularly include these issues in our conversations with patients. In order to care well for dying patients and their families, it is necessary to understand how prognosis, culture, policy, and training all shape a physician’s capacity to provide exceptional care for those navigating an experience that is, without exception, shared by all. 680 www.amajournalofethics.org References 1. Gruneir A, Mor V, Weitzen S, Truchil R, Teno J, Roy J. Where people die: a multilevel approach to understanding influences on site of death in America. Med Care Res Rev. 2007;64(4):351-378. 2. Dumanovsky T, Augustin R, Rogers M, Lettang K, Meier DE, Morrison RS. The growth of palliative care in US hospitals: a status report. J Palliat Med. 2016;19(1):8-15. 3. Smith S, Brick A, O’Hara C, Normand C. Evidence on the cost and cost- effectiveness of palliative care: a literature review. Palliat Med. 2015;28(2):130- 150. 4. Temel JS, Greer HA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363(8):733-742. 5. Finestone AJ, Inderwies G. Death and dying in the US: the barriers to the benefits of palliative and hospice care. Clin Interv Aging. 2008;3(3):595-599. 6. Centers for Medicare and Medicaid Services, US Department of Health and Human Services. Advance care planning. https://www.cms.gov/Outreach-and- Education/Medicare-Learning-Network- MLN/MLNProducts/Downloads/AdvanceCarePlanning.pdf. Published August 2016. Accessed March 2018. Ilana Stol, MD is a hospice and palliative medicine fellow at the University of Pittsburgh. She recently completed an internal medicine residency and geriatric medicine fellowship at the Yale School of Medicine. Her clinical and research interests include the intersection of geriatrics and palliative medicine, medical care for older adults with intellectual disability, and complex medical decision making in geriatric patients with multiple comorbidities. Citation AMA J Ethics. 2018;20(8):E678-682. DOI 10.1001/amajethics.2018.678. Acknowledgements I would like to thank Dr. Mark Siegel for his guidance, support, and mentorship both during this project and throughout my entire residency. AMA Journal of Ethics, August 2018 681 Conflict of Interest Disclosure The author(s) had no conflicts of interest to disclose. The viewpoints expressed in this article are those of the author(s) and do not necessarily reflect the views and policies of the AMA. Copyright 2018 American Medical Association. All rights reserved. ISSN 2376-6980 682 www.amajournalofethics.org AMA Journal of Ethics® August 2018, Volume 20, Number 8: E683-689 CASE AND COMMENTARY: PEER-REVIEWED ARTICLE How Should Refusal of Tracheostomy as Part of an Adolescent’s Perioperative Planned Intubation Be Regarded? Case and Commentary by Katherine Gentry, MD, MA and Aaron Wightman, MD, MA To claim one AMA PRA Category 1 Credit™ for the CME activity associated with this article, you must do the following: (1) read this article in its entirety, (2) answer at least 80 percent of the quiz questions correctly, and (3) complete an evaluation. The quiz, evaluation, and form for claiming AMA PRA Category 1 Credit™ are available through the AMA Education Center. Abstract Here we present a case of a patient in terminal respiratory failure refusing to consent to emergent tracheostomy in the setting of an anticipated difficult intubation. We examine ethical concerns that arise from deviations from the standard of care in the operative setting and the anesthesiologist’s sense of culpability. Finally, we will review the ethical arguments and guidelines that support anesthesiologists’ participation in palliative operative procedures when limitations on resuscitation are in place. Case Kelly is a 16-year-old girl with spinal muscular atrophy type 1. Her weakness made it difficult to perform needed pulmonary clearance treatments, leading her to develop pneumonia and progressive air hunger that required her to be hospitalized. After discussion with her pulmonologist, she and her parents requested intubation to facilitate aggressive attempts at improving pulmonary toilet. If these attempts proved to be unsuccessful, Kelly’s parents, with her assent, requested that the endotracheal tube and ventilator be discontinued and that goals of care be shifted to focus on comfort only. As Kelly’s weakness and contractures prevented her from fully opening her mouth, oral intubation was predicted to be difficult; therefore, anesthesiology and otolaryngology services were consulted to consider performing a fiberoptic nasal intubation in the operating room. During discussion of the plan, the anesthesiologist explained that in the case of a failed intubation attempt, her next step would be to secure the airway surgically (ie, via a tracheostomy). This troubled Kelly and her family, as they considered life with a tracheostomy to be an unacceptable outcome. Over the years, they had consistently refused tracheostomy and chronic ventilation as a potentially life-sustaining treatment. For Kelly, a life worth living included retaining some ability to speak. Given her AMA Journal of Ethics, August 2018 683 degree of weakness, a tracheostomy would render her unable to vocalize, and she would require mechanical ventilation without respite.1,2 Kelly’s acceptance of short-term intubation but refusal of an emergency tracheostomy was difficult for the anesthesiologist to accept. She rejected the notion that a tracheostomy could be refused in the setting of an operating room intubation, as the provision of anesthesia could directly precipitate respiratory insufficiency, and a tracheostomy could immediately treat this iatrogenic complication. Prohibiting a tracheostomy would limit the anesthesiologist’s ability to secure Kelly’s airway successfully. Furthermore, Kelly could die of respiratory failure in the operating room if the intubation attempts were unsuccessful. The anesthesiologist expressed moral concerns that she had a duty to rescue a patient under her care and that by honoring the patient’s wish for no tracheostomy she could be playing a role in “killing” or “euthanizing” the patient. Commentary Spinal muscular atrophy (SMA) is considered the most common lethal disease of children younger than 2 years of age in the United States.2 SMA results in weakness and wasting of voluntary muscles due to degeneration of anterior horn cells. Intellect is normal and sensation is intact.2 In SMA1, also known as Werdnig-Hoffman disease, symptoms of hypotonia and diffuse motor weakness present before the age of 6 months; children with SMA1 typically are never able to sit without support.3 Most children with SMA1 die by the age of 2 due to respiratory failure.3 Survival rates for children with SMA1 have improved for patients born after 1994, likely due to increased use of noninvasive ventilation, invasive ventilation, feeding via gastrostomy, and nutritional supplementation.4 The recent introduction of nusinersen can significantly improve functional status and survival in SMA patients who receive this therapy.5,6 Nevertheless, for Kelly to have survived to the age of 16 without the need for chronic invasive ventilation is quite unusual. It is generally accepted that parents or guardians of children with SMA1 may refuse tracheostomy. In a 2012 multinational survey of pediatric pulmonologists and intensivists, 95% felt that parents should be able to refuse tracheostomy in children with SMA1.7 In the same survey, 78% felt that intubation and ventilation would be acceptable in the setting of acute respiratory failure, but only 60% felt that it would be an acceptable therapy for chronic respiratory failure.7 In Kelly’s case, intubation was intended to be a short-term intervention to enable her to recover from an acute pulmonary infection and thus would likely be viewed as appropriate by many physicians, based upon the responses in the survey cited above. Anesthesiologists are responsible for the “support of life functions under the stress of anesthetic, surgical, obstetrical and radiological manipulations.”8 This support is 684 www.amajournalofethics.org